THE STORY:

My beautiful and wonderful nephew, Cameron, was born with a rare disease known as Popliteal Ptergyum Syndrome (PPS). PPS is an inherited condition affecting the face, limbs, and genitalia. The syndrome goes by a number of names including the popliteal web syndrome and, more inclusively, the facio-genito-popliteal syndrome.

The diagnosis of PPS has been made in several ethnic groups, including Caucasian, Japanese, and sub-Saharan African. Males and females are equally likely to suffer from the syndrome. Since the disorder is very rare, its incidence rate is difficult to estimate, but is less than 1 in 10,000.

Clinical expressions of PPS are highly variable, but include the following:

* Limb findings: an extensive web running from behind the knee down to the heel (90%), malformed toenails, and webbed toes.
* Facial findings: cleft palate with or without cleft lip (75%), pits in the lower lip (40%), and fibrous bands in the mouth known as syngnathia (25%).
* Genital findings (50%): hypoplasia of the labia majora, malformation of the scrotum, and cryptorchidism.

This little man has been an inspiration to everyone who meets him, even though he is only 20 months old. In his young life, he has already experienced more surgeries than the average adult. Thanks to Children's Hospital and associations like the American Cleft Palate-Craniofacial Association, Cameron has been able to thrive as a happy, loving child. His family is eternally grateful!

I am adding this project to my profile in the hopes to raise awareness and funds for this association. Every child deserves to smile big and smile often. I want to make sure that they do!